Thursday, 9 January 2014

Not suitable…

Just before Christmas, I signed up to take part in a drug
trial for patients who suffer from Friedreich’s Ataxia. The study is part of
on-going research into the affect that Vitamin B3 has on people with FA (read
more here if you’re interested: http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_14-6-2013-16-49-16).
I thought I’d give it a try because bringing the symptoms under control so that
I didn’t deteriorate anymore would be great and vitamin B is a supplement that
can be purchased over the counter so it should be safe. Yet after answering a
few questions, the doctor had a few concerns regarding my recent heart problems
and a slight tendency I have to choke.

In a way, I was sort of relieved that I wasn’t allowed to be
involved in the trial because I can’t be bothered to travel to Hammersmith
every week for tests. However, the other side of me was annoyed because the
worst part of my condition is the gradual deterioration so freezing the FA in
its tracks would be brilliant. I shouldn’t get ahead of myself though because
the findings haven’t proved conclusive so far and vitamin B3 might not even help.
Anyway, I’m going to have a few tests so I may end up as a human guinea pig
after all.

The funny thing (to me anyway) is that the doctor sort of
implied I was too disabled to take part but I am used to being told the
opposite. What I am referring to is a Boccia (like bowls but sitting down)
tournament I attended a few years ago. I’m pretty sure it was somewhere in the
Midlands but I can’t remember exactly. Anyway, my mum and I travelled up the
night before and stayed in a hotel around the corner. When I went to register
in the morning, I was told in no uncertain terms that I was “too able to
compete”.

You heard it right. I wasn’t disabled enough eventhough I
couldn’t walk and my arms were shaky, meaning I can’t throw a ball like an
ordinary person. For the first time ever, someone (me) was upset and angry
being told he WASN’T disabled enough. It was the wasted journey that annoyed me
the most. No one wants to be in the Midlands at the best of times, let away
when you’re turned away from a sporting tournament (that’s a joke if you live
in the Midlands. Don’t take offence!) and have to drive home. The people
running that completion were clearly morons.